The Importance of Patient Input for Coverage and Payment of New Therapies

Quick Overview

Sarah Pitluck, a healthcare access expert, and John Jarvis, a market access consultant, discuss the importance of patient input in the coverage and payment of new therapies at the 2022 FAST Science Summit. Pitluck highlights her experience in pricing and reimbursement for gene therapies and emphasizes the need for a strong reimbursement strategy to ensure timely patient access. Jarvis discusses the Angelman Syndrome Caregiver Impact Survey, which aims to gather data on the cost of living with and caring for individuals with Angelman Syndrome to support coverage and access for new treatments. They encourage attendees to participate in the survey and offer assistance at their booth.


In this talk, we will discuss the significance of patient input in the coverage and payment of new therapies. We will hear from two experts in the field, Sarah Pitluck and John Jarvis, who have extensive experience in healthcare access, pricing, reimbursement strategy, and patient advocacy for biotechnology products.

Sarah Pitluck’s Experience

Sarah Pitluck has over 20 years of experience in global healthcare access. She was the vice president and head of global pricing and reimbursement at Spark Therapeutics, where she priced the first gene therapy ever approved by the FDA, Luxturna. Sarah led the rollout of Spark’s unique alternative payment options and worked to ensure timely patient access to Luxturna. She has also worked at companies like Alexion Pharmaceuticals and Genentech, focusing on reimbursement for rare disease drugs.

Sarah emphasizes the importance of having a pricing and reimbursement strategy in place for new therapies. She has witnessed both successes and failures in this area, with some products struggling to get paid for and access. Sarah believes that working together with organizations like FAST and pharma partners is crucial to ensure that new treatments for Angelman Syndrome receive coverage as soon as they are approved.

John Jarvis and the Patient Impact Survey

John Jarvis, a strategic market access and health economics consultant, specializes in generating and analyzing data to support access for new pharmaceutical treatments. He has worked with Medicus Economics to support analyses for over 100 drugs across 20 countries, including gene therapies approved by the FDA.

John highlights the importance of patient and caregiver input in supporting coverage and access for new treatments. To gather data on the impact of caring for a loved one with Angelman Syndrome, Medicus Economics has created the Angelman Syndrome Caregiver Impact Survey. This survey aims to help payers, insurance companies, governments, and regulators understand the daily challenges faced by caregivers. John encourages attendees of the FAST Summit to fill out the survey, with a goal of obtaining responses from at least 200 households.

How to Participate in the Caregiver Impact Survey

The Caregiver Impact Survey is available at the Medicus Economics booth in the lobby of the summit. Friendly staff members are present to assist and answer any questions. Participants can complete the survey on their phones using QR codes or borrow laptops provided by Medicus Economics. Those who complete the survey will receive a trendy shoulder bag as a token of appreciation.

For those unable to attend the summit, the survey is also available online in the Global Angelman Syndrome Registry.


Patient input is crucial in ensuring the coverage and payment of new therapies. Sarah Pitluck and John Jarvis emphasize the need for a pricing and reimbursement strategy and the collection of data through surveys like the Caregiver Impact Survey. By working together and providing valuable input, the Angelman Syndrome community can improve access to life-changing treatments for their loved ones.

Talk details

  • Title: The Importance of Patient Input for Coverage and Payment of New Therapies
  • Author(s): Sarah Pitluck, John Jarvis
  • Author(s)’ affiliation: SP Consulting; Medicus Economics
  • Publication date: 2022-12-02
  • Collection: 2022 FAST Science Summit